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5th grader who beat cancer experiences a second miracle

Presley Blackburn-Cody’s new fifth grade classmates at White Mountain Elementary called her a “germ freak” when they first noticed her wiping down her desk every day with disinfectant, but not anymore. Now all of them are germ freaks together.

Cassie Blackburn-Cody is the mother of Presley, a fifth grader who beat a rare form of cancer but now is fighting an auto-inflammatory disease.(Photo: Dave Tomlin/Ruidoso News)

In this family snapshot, Presley Blackburn-Cody celebrates the news with her mother at Little Rock Children's Hospital that her terminal cancer had miraculously disappeared.(Photo: Courtesy)

Presley Blackburn-Cody’s new fifth grade classmates at White Mountain Elementary called her a “germ freak” when they first noticed her wiping down her desk every day with disinfectant, but not anymore. Now all of them are germ freaks together.

“They all just voted to help any way they can,” said Presley’s mother Cassie. “Everyone is trying to help, which means the world.”

Presley achieved a miracle recovery last year from Ewing’s sarcoma, a rare and highly malignant tumor in her right arm that her doctor said they had identified too late to treat.

“They classified it as terminal,” Cassie said. “We were just going to make her comfortable. I can’t even express how I felt. Hopeless.”

The family was living in Oklahoma near Idabel, where Presley’s father Danny is a construction contractor. When they got the bad news they headed for Little Rock Children’s Hospital for a biopsy and other tests. That’s when the miracle happened.

“The orthopedic guy came and sat down across from us and took his hat off,” Cassie said. “He said, ‘I can’t explain it, but it’s gone. All of it. A miracle has been worked.’”

Cassie had seen images of the tumor. It was a hideous, misshapen mass on the bone of her daughter’s upper arm that hurt bad enough to make Presley cry in her sleep. Its grip had been so ferocious that it split the bone and spread to lymph nodes and ribs.

The bone damage and other traces of the tumor’s work were still visible on the MRI’s in Little Rock. But the tumor itself had disappeared entirely. Presley’s death sentence was lifted.

It would be wonderful if the story ended there, but Presley and her family almost immediately faced a new and even more exotic medical challenge. She now has chronic recurrent multifocal myelitis or CRMO, an autoinflammatory disease that still isn’t fully understood.

One of its hallmarks seems to be extreme vulnerability to flare-ups of painful inflammation after exposure to ordinary viral or bacterial ailments like colds and flu. That’s where the Clorox wipes and Germ X come in.

“She can’t fight anything,” Cassie said.

Presley moved to Ruidoso with her mother and her 9-year-old brother Payton in August, because Cassie’s parents, Gary and Jackie Bailey, live here and she needed their help. Danny stayed behind in Oklahoma, although he would join the rest of the family here if he could find suitable work.

With the help of weekly injections administered by her mother, Presley was able to come out of the antiseptic “bubble” that had kept her home-bound in Oklahoma. She entered fifth grade at WME as a normal student. Except of course that she’s a germ freak.

But it hasn’t taken long for Presley, with help from her teacher Rita Jarvis and the school nurse, to explain to the rest of the class what the anti-bacteria phobia is all about and recruit everyone to keep Presley’s exposure to an absolute minimum.

“Mrs. Jarvis came in on a weekend and wiped down the whole classroom,” Cassie said. “They’ve let Presley have her own laptop which only she touches, which is amazing.”

Amazing, but not foolproof. There was a flare-up a few weeks ago that forced Presley to make an emergency week-long trip to Little Rock. She came home with doctor’s orders to wear a surgical mask to school and braced herself for another round of teasing.

But her classmates had a surprise for her. They greeted her at the classroom door with a “Welcome Back, Presley!” sign, and all of them were wearing masks too.